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Dr. Mostashari, care coordination really stinks in my city

Federal HIT coordinator Farzad Mostashari, M.D. made waves this week, announcing his resignation effective this fall. Tributes and accolades, all deserved, are rolling in from vendors, colleagues, data standards architects and IT leaders for healthcare providers. Most of them make reference to his high-energy charisma and the constant presence of his fabulous trademark bowties.

The thing about Mostashari’s tenure that I’ll remember most, however, is how he would now and then stop talking the technical alphabet soup of HIE, IHE, HL7, CEHRT and CQMs to refocus the discussion on people. Patients. Whom this technology and data standards are designed to benefit. Often, he would use examples from healthcare experiences in his own family to illustrate the potential value of interconnected, interoperable health IT systems. If he wasn’t talking about his own interactions with the healthcare system, he’d bring up his parents’. Reminding us he was not just a policy czar but a dad, too, one of Mostashari’s last tweets before revealing the news of his stepping down was about rowing with his son.

Those anecdotes resonated with me. In the early hours of Father’s Day last June, I woke up to maddening pain in my calf. Got up, thought it was a cramp, rubbed the back of my leg and holy smokes, it turned black and blue all the way from the back of my knee down to my Achilles’. Dr. Google quickly told me it could possibly be deep vein thrombosis (DVT) and I’d better get that checked out ASAP lest, you know, clots traveled to my lungs and I started vomiting stuff that resembled coffee grounds.

Thus began a frustrating exercise in excruciatingly non-interoperable health data and the most piss-poor care coordination I’ve experienced to date. My experience as a reporter in the HIT world just made it more painful to watch this unfold, seeing systems fail left and right. Systems my tax dollars are allegedly funding to fix through meaningful use.

Without getting too far into the weeds, here are the greatest hits:

  • The urgent care center affiliated with my primary care facility told me over the phone they no longer took appointments and it was first-come, first-served, and I’d better show up right when they open if I didn’t want to stand in line. That was incorrect, I later found out after going in at the start of their business day, at the expense of seeing my young children performing in a tribute-to-dads pageant at church because of the mistake. They do take appointments. Next step: Let me book my own on the Web.
  • The physician’s assistant (PA) booked me for an ultrasound at one of our two local hospitals for 10 A.M. after he and the doc on premises ordered it. The tech showed up “for my 11 A.M. appointment,” giving me the opportunity to sit off a bonus hour in the hospital lobby.
  • I whiled away some of that time giving the hospital intake folks all of my information because their EHR was not interoperable with the EHR at the urgent-care center a couple miles away. Both EHRs, incidentally, are software brands with which all health IT people are intimately familiar.
  • The ultrasound tech had waltzed in so tardily that, by the time I returned to the urgent care center for the PA to receive and then pore over the faxed-in results, it was his lunch hour. Tick, tock.
  • I’m still waiting for the “followup visit once we receive the final radiology report because this is only the preliminary,” almost two months later. Apparently it’s dropped through some care-coordination crack. Must not be profitable enough for them to follow up?
  • That half-day odyssey cost me north of $500 out-of-pocket, once my insurance and the providers concatenated all the claims, codes and payments. It would have been nice to have seen what the competing hospital in town would have charged — or at least to have been given a choice in the matter.

And the worst thing is, the only ones who apologized or sympathized with this colossal waste of time were the nurse and receptionist at the urgent care center. They were saints. As for the rest of them? Business as usual, not their problem. Apparently their data systems were just minimally meaningful enough to cash their incentive checks and whatever else happens, happens.

I wish Dr. Mostashari could stick around awhile longer, banging away with every policy and financial hammer he can, as he is fond of threatening, to make this all work better.

It is my hope that his successor will make the executives in charge of healthcare in my city and everywhere else understand that the patient’s time is just as important as theirs — and force them to make healthcare the compassionate, patient-centered ideal their marketing materials swear they’re striving to become, every hour of every day. We’re people, not spreadsheet cells, profit centers or grist for their data-analytics mill. We’re parents. We’re busy, just like them. We need to get back to our lives, too.

On Twitter the next day, I let off some steam, whining in generalities about my experience without offering particulars. Regina Holliday tweeted back, “is it time for another jacket?” I said no, because in the end, my story is one of minor inconvenience compared to many other patients’. The ultrasound showed I definitely had clots in my calf, but in the lesser veins and not the DVT variety. The story, for the most part, had a happy ending. God forbid I was really sick, or this occurred on a work day, no?

Farzad, I agree with the Motorcycle Guy: Whoever replaces you had better be just as much of a pain the posterior, because the next time I run into “care coordination” like this, I’ll probably have to be treated for an aneurysm comorbidity. There’s just no excuse. Not anymore.

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